Ask the Advocates: Myeloma Edition
The month of March is Myeloma ACTION Month. In honor of this awareness month, we asked our advocates who are diagnosed with MM the following question:
What is 1 piece of advice that you would give to someone who is diagnosed with myeloma?
Cindy "Myeloma Teacher" Chmielewski
Giving just 1 piece of advice to a newly diagnosed myeloma patient is challenging. I have several important recommendations. Patients, no matter their diagnosis, need to educate themselves, find a support network, and make sure their voice is heard. Additionally, a newly diagnosed myeloma patient MUST see a myeloma specialist. A myeloma specialist is someone who ONLY treats MYELOMA patients. Myeloma is a rare cancer. Your community doctor may be treating only a handful of myeloma patients.
Practice-changing research in myeloma is happening at lightning speed. More new treatments have been approved in the last decade for myeloma than for any other cancer. Not only have treatments changed, diagnostic and prognostic testing have also evolved dramatically in last few years. Your community doctor may not have access to the latest genetic testing that will indicate whether or not you are considered high-risk or the most sensitive tests that monitor your response to treatment.
It is imperative to consult with a myeloma specialist at diagnosis so a personalized treatment plan can be developed that matches your biology and overall treatment goals. Once that treatment protocol is established you can receive your therapy at your community oncologist’s office. It's important to check in periodically with your myeloma specialist to monitor your response to the prescribed treatment and to make necessary changes if needed. My myeloma specialist and community doctor have successfully worked hand in hand for the last decade. I have the best of both worlds.
The 1 piece of advice I’d give to a newly diagnosed patient and their caregiver has 4 parts. When I was diagnosed with myeloma nearly 8 years ago, I didn’t know where to turn, had never heard of myeloma and my first internet search scared the daylights out of me.
So my 4-part 1 piece of advice is:
- If you can, see a myeloma specialist. Someone who has experience with many myeloma patients. There is no standard treatment for myeloma and each patient reacts differently to treatment. So you need a doctor that understands this.
- Be careful with the internet. When I began my search on the internet I had no idea what were good sources of information. I learned that there was old information and myeloma stats didn’t necessarily fit me. Recognize that in the past few years, there are a number of new, wonderful drugs. Studies on the internet might not reflect the new developments. Find patient stories and blogs. They are helpful, informative and honest about the journey ahead.
- For patients and caregivers, reach out to other patients or caregivers. Because this is an incurable disease, the support and inspiration from others in the myeloma community is powerful. There are myeloma support groups. The Leukemia and Lymphoma Society has the First Connection program. It is a peer-to-peer program where a “veteran” patient or caregiver will reach out to recently diagnosed patients or their caregiver. The LLS tries to match people up by treatment, age, gender, and geographic location. And if you find a blog that speaks to you, feel free to email the author. I continue to tap into the experience of others with similar mindsets to me. I’ve never not received a reply from someone I emailed. This stands for caregivers and patients.
- My doctor told me to watch the trends. We do regular labs and if we compare one lab to the next, we might got worried and anxious over a certain change. Don’t do this. Watch your labs and compare results over time. A change in a result from one lab to the next might mean something or it might not. There are sometimes glitches . So watch how your numbers change over a few months. Ask you doctor what numbers to watch. The initial diagnosis is frightening and the first year with the disease is scary for the patient, caregiver and loved ones. Don’t add to the stress by fretting on things that may not mean anything.
If I had time, I could probably come up with a dozen other one pieces of advice. But what I listed above are what mattered to me and I think are good things to follow. And I try to pay it forward, I had and have a group support network of other patients, who I now call friends. So I make sure that I make myself available to anyone who needs to talk or has a question. We’re all in this together. Stay strong!
If I had to give one piece of advice it would be “develop patience”. If you or a loved one has been diagnosed with myeloma or any blood cancer, you will be overwhelmed with emotion, fear, doctor’s appointments, decisions, and very likely, inquiries from friends and family. Your cup will runneth over, and not with good things. Patience, if anything, will make that cup bigger. It somehow helps you endure emotional overload.
There will be times you want to make decisions before having all the information, times you think the stress and pain will never get better, and times you want to scream out to friends, family, and God. Know that it will get better. Focus on one moment at a time, which will turn to one day at a time, which will then be one year at a time.
Patience will ultimately give you hope and calm in your head and soul. It will also be a tremendous positive influence to all the people around you, which in turn, will create positive healing energy for everyone in your ever-widening circle
My advice would be ... BREATHE! Despite these horrible words, "multiple myeloma," you will get to a point where you'll get a grip on how you need to move forward, and that includes living your life to the fullest with the extra baggage.
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